luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I found out Tues when I received the results of a genetic test run by my LLMD. I have been sitting on this information all week even knowing this information could be very important for others who may be like me.
I hesitated to bring it to lymenet because there are a few here who would bash me for telling it. This is very shocking information for me, parts of which are very personal and I do not need to share and simply am not ready to share.
Anyone who bashes me will be hurting me beyond anything you can understand. My story is real. I am real and I know there are others out there like myself who need to know that the medicine they take to get well could in fact make them more sick than ever.
My illness is joint arthritis but it can effect you mentally or physically in any number of ways.
Here is what I have learned this week from the genetics test.
First became ill in 2005 and was diagnosed Lyme/Rheum. Arthritis Jan 06. I was very, very sick at the time.
Change of diet and alternative care brought my RA from a high moderate to a weak positive.
Rebit in May 07, went to LLMD for abx since infection recent. Did very well until my Jan 08 visit.
I have Rheum Arthritis as a result of my lyme but I am doing very well and was shocked when in January 08 the doctor found inflamation in practically every joint. She was very upset (LLMD is also a rheumatologist) In Nov I had been free of any inflammation.
I said I don't think I detox very well and she agreed. She recommended a genetic test to see if detoxing is a problem.
Got the results this week and have not been able to speak of it before now. I'm in shock about some of the results as this test tells you what terminal diseases you are suseptable too.
It also tells you if you have problems eliminating toxins and what kinds of toxins you have trouble eliminating.
I can't eliminate cigarette smoke, exhaust fumes, molds, NSAIDS, SSIs, ABX. LLMD who until this test had me on 8 different medicines, yanked them all. She said "I have been poisoning you."
The good news is there are some alternative things I can take and some things I can do that should offset this deficiency. Hopefully, it will keep my RA in remission for life as well as protect me from the deadly diseases I am suspectable to.
The medicines, much of which are prescription strength and compounded by a special pharmacy are not narcotic. They are natural and aid my body in detoxing these things I am unable to detox on my own.
Furthermore, the test results show on a number of my deficiencies that cruciferous vegetables aid in the detoxification process and I need to eat generous portions of these vegetables.
I will happily eat my vegetables. I have been telling and telling everyone here what a phenominal difference a change of diet had for my inflamation and pain. WELL, I WASN'T WRONG!
Eating vegetables for me is not just a healthy idea, it is a matter of life or death.
My original MD spent a year giving me IVs of glutathione for detox. He always said toxins were my main problem. He was right.
Current LLMD is treating me for Babesia and she is switching me to MTE's which are an herbal IV.
I am sure I am not the only person who benefits from eating right and who actually suffers from toxic overload. If your genetic makeup makes it hard for you to detox, then you might be adding to your toxic load with your medications too.
So, yes. Natural is working 100% for me and I am living a very normal life. I no longer suffer joint pain. I brought a horribly crippling disease to remission almost completely on natural care alone (working with very knowledgeable doctors)
Furthermore, the abx, Advil, MTX etc were poison to me because I am genetically incapable of eliminating the toxic side effects. Thank God I had very little abx during this illness.
God's hand has protected me by guiding me to integrative doctors. I feel truly blessed.
I am doing very well.
Abx may be your answer or they may be your undoing. For me, abx did clear a nasty case of H.Pylori which made me feel the best yet. Apparently though, after 7 mths of medicines, I was beginning to overload with toxins and swelling was returning to my joints.
Everyone should understand that there are two sides to this sword.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
I will be starting formal treatment in a couple of days after I get some more bloodwork done.
I have severe constipation which does not help any detox situation.
Question...
Do or did you have severe constipation and
how did you feel with your glutithione iv's? Did you feel that they helped you?
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Hi Luvs2...a few thoughts 1) is this detoxigenomics? I have been wanting to take that test though it's expensive 2) I am not sure your results are as dire as you feel (you sound shocked, frightened upset). Many folks have some impaired pathways. It isn't that pathways don't work at all. They just may be downregulated or upregulated. A little more research may be helpful, you may find even more things that help bolster your pathways. Sometimes imo that's why folks like me need IV magnesium in vitamin/minearl IV's or else go downhill rapidly. Maybe there is some pathway that if given lots of extra magnesium can function better. And b5 and b6. 3) Remember that herbs use these pathways too so don't be totally sanguine about herbs esp. IV. They have not been studied well enough to even know what pathways they use. So be careful.
I doubt anyone will bash you. If you would PM me your results I'd be interested. I've had continuing building problems that have been very upsetting and disruptive in my life and as usual have had to put off things like the detoxigenomics test which as I said, this sounds like, and I too have wanted to take. But I already know by my body's reaction that I'm likely to show certain pathways impaired.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
Peacesoul
Unregistered
posted
congrats on your healing path and I'm so happy you feel well. Thanks for sharing your story. It brings hope :-)
p.s It's so concering when you would start a thread asking people not to bash you. Shows that this site is in need of some work. There is nothing to bash here. It's a great thread :-)
IP: Logged |
posted
what is microwave sickness??
Posts: 12 | From Pa | Registered: Feb 2008
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
So glad you found things that help you...and for sharing this with others
Unfortunately, with lyme their can be soooooooooooooooooooooo much variation between patients that every side of the treatment sphere is good to know about...
If it was easy and came in one size fits all the board probaly wouldnt exist and it definetely would not have had anywhere near the amount of members it has.
Wishing you continued health and improvement on your new treatment plan
posted
Thanks so much for sharing this important information, Luvs.
Would you mind telling us specifically which test you had done to reveal this info to you? Was it the HLA test or some other test? I think I might benefit from having it done.
Fuzzy
Posts: 503 | From Maryland | Registered: Oct 2007
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
I'm so sorry to hear about your tests & the shock the results have given you. Please do what you need to take care of yourself right now, and remember to breathe.
When you're up to responding, I, too, would be very interested in hearing which tests you had done, and which lab ran them.
Take care, Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I feel that if you can find what works, then that is great, if antibiotics dont work for you and you find something else to get well, that is great.
As long as you can get well, that is what counts I feel, get your life back if you can.
I have stopped antibiotics twice and relapsed so for me, I know what I need. I have done the herbal route and it was not strong enough.
I hope that you get relief and healing from this route.
What kind of terminal illnesses are you talking about? could it be because you cannot eliminate toxins and therefore these built up toxins
CAUSE the diseases that are terminal? if this is the case then maybe by detoxing with your diet and such, you can then eliminate getting these terminal diseases?
I would be very interested in what kind of terminal diseases you are talking about, because it would then add to my knowledge of things here, and I am wondering if these terminal diseases that you are suseptible too, can or may caused
by a build up of toxins and maybe you can avoid them?
Sometimes I read that if you KNOW what diseases you are suseptible too, you can do things to avoid getting them, so maybe you can too?
If you dont feel comfortable saying what they are, that is ok, I understand.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
| IP: Logged |
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
thank you so much for starting this thread, luvs.
i, too, am very interested to know the specifics of the test you took.
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Thank you everyone for your kind words.
It is sad that I was too afraid to tell this because I just couldn't bare the thought of being heckled.
Some think the answer is drugs no matter what and some think the answer is never drugs no matter what.
I totally agree that there are so many different variations between us that no one method is the right one for everyone.
O'babe, thank you for your supportive words. Actually, I am elated to know the enemy and to know the doctor has an answer. I was really, really dreading any belittling of my story.
I am elated mainly because my doctor was elated. She said the results are just what she suspected and that she does have an answer. The compounded meds she is prescribing should offer the detox needed. I will have to do a maintenance level of these drugs for the rest of my life. For the next 4 to 6 mths I will be on a very intense level.
She said "Do not do InFared Sauna until we get the toxin load down". She promised it could make me psychotic or land me in the hospital. After we get the load down, SIRs are a great tool to keep me detoxed.
I finally understand why I could not tolerate an Epsom Salt bath and why the zeolite Destroxin recommended on this board blew my right knee up the size of a basketball. Too much toxin being moved at one time and genetically, I could not eliminate the toxins from my body. Go slow, go slow, go slow.
Somehow when this all began, I thought go slow meant 6 mths. I never dreamed it could mean 6 yrs to life.
For those of you who just hate your veggies, don't worry. She was going to prescribe a pill (natural I guess) to supplement the veggies, but when I told her how much I like and do eat and juice veggies, she said "Great! I would much rather you get your nutrition from the food." So, there is something you can take to compensate for not eating your brussel sprouts.
I am glad to know my enemy so that I can take steps to try to prevent it from ever happening. I am worried about my insurance company learning of the test and cancelling me as I am high risk for several types of "C". Man, I can't even write it. It is so specific it tells me which ones and where in my body I would be most likely to get it.
Neither C nor RA run in my family. It is like my parents got together and created the perfect storm in me. I asked my mother to tell me the truth....am I adopted? She laughed and said "she was there at my birth and she remembers it well"
Good news: Being susceptable, does not guarantee it will happen. Seems I am susceptable for alcoholism (I never cared much about drinking, not even during my partying 20's) ADHD (didn't get it but my son did) BiPolarism...thankfully missed that one.
I would love to tell you that Lyme damaged my DNA causing this. But my doctor said I was born with these genes and literally every antibiotic I have ever taken has been piling up in me. Every cigarette I smoked (15 yrs...quit 22 yrs ago), 10 yrs of Orkin still sitting in me, etc. No doubt, lyme's toxins hit me really hard too. I suffered mold allergies and asthma for years. Molds are still an issue but she says she has something that with just a drop under my tongue will allow me to handle molds as good as anyone.
That is when I asked if these things were homeopathic and she said no. They are full strength. I don't know anything more than that right now but will certainly be reading up on it once I receive them.
Because I have been detoxing through diet, supplements and IVs for 2 yrs this April, I am sure I have already removed a good amount of toxins and that is why I feel so good.
The test is called DetoxiGenomic Profile. It is not the HLA test. I still know very little about it and others here probably know more.
TS96, as a teenager, I suffered constipation real bad. After a few days of eating McDonalds, Arbys and Pizza Hut, I would crawl home to Momma's cooking after which I would have the most painful bowel movements. Felt like giving birth.
See, I always needed my veggies because I was born with an inability to detox junk food. Cruciferous vegetables are a natural detoxer. As an adult, I ate right for many years and was very regular. Even at the point my illness began in 2005, I was and continue to be very regular. The doctor did say some of the stuff she is prescribing will promote sweating. She wants me to detox through my skin and hair to take some of the work off the liver and kidneys.
The last 15 yrs, my husband and I owned our own business and were together 24/7. He is the king of bad diet. KING!!!! We used to have fights over where we would eat lunch and dinner. There was just no time for cooking. He hated the atmosphere of the restaurants that offered vegetables, so my diet tanked. Gradually, my weight gained and I ballooned with bloat.
I never got obese. Not even considered fat, because I rode horses and was very active. Still, I could tell I was on a gradual health decline; and I tried to compensate with vitamins, herbs and tried to avoid antibiotics, but every year I would seem to catch something requiring abx. I have taken one abx or another practically every year of my life. There was a brief period of about 12 yrs where I enjoyed really good health. It was before I worked with my husband. I was running and on weight watchers which promotes a very healthy diet. My allergies disappeared and I did not see a doctor during this time.
I was always happy to eat a package of brocolli as much as anything. I am just amazed to realize my body always knew what it needed.
If you are not getting well, please consider other possibilities.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
The compounded meds she is prescribing should offer the detox needed. I will have to do a maintenance level of these drugs for the rest of my life.
Whoops! Drugs is the wrong word, but I am not sure what else to call it at the moment. Not narcotics and not homeopathics. The compounding pharmacy is in Washington state. I will post again once I receive the meds and hopefully will be able to identify them.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Please let me clarify one thing.
I am not saying "never take antibiotics". Abx do kill bacteria and are important tools to healing.
If you can detox them from your system then you have nothing to worry about from abx.
If you have trouble detoxing them from your system, then you must do something in addition to the abx. Something to clear the toxic side effects of the abx, the bacterias,fungi, parasites.
The doctor yanked my abx because she could see I was experiencing toxic overload. She could see this before I could feel it.
Please don't think I am saying never take abx. I am saying, detox, detox, detox. Diet can promote health or sickness depending upon how you eat. So make every bite of food count.
Be aware that some of you, like me, may have an inability to remove toxins, many different kinds of toxins from your body. These toxins can cause pain and/or mental anguish. If your LLMD doesn't address whole body healing, find another doctor who does and work with both of them.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Wow, Luvs, this is really terrific information!
I am SO glad you had this test done, and that your doc has some alternative ideas in mind, and is completely on board with finding a different path to resolution of your health issues - not just the RA.
Luvs, I hope you see this new information as a very positive step in the direction you need to go. I can't tell you how excited I am for you - what you just learned confirms what you have suspected the past couple of years.......
For some of us here, orthodox drugs really can be poison. This isn't some kind of `slam' against drugs or conventional medicine - it is a genuine health obstacle with `genetic' roots.
Luvs, thanks very much for bringing this problem to the forefront.
I'm looking forward to hearing more about the test that was done and some of the unorthodox treatments that might be good substitutes for conventional therapies.
All the best!
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
I'm having difficulty finding specific information on the DetoxiGenomic Profile test. The test is listed at Genovations website, but access to information about the test is restricted.
Here are the tests offered at Genovations:
CardioGenomicPlus Profile Evaluates genetic variations (SNPs) that modulate blood pressure regulation, lipid balance, nutrient metabolism, inflammation, and oxidative stress.
OsteoGenomic Profile Evaluates SNPs that modulate bone formation (collagen synthesis), bone breakdown (resorption), and inflammation, including key regulatory mechanisms affecting calcium and Vitamin D3 metabolism.
DetoxiGenomic Profile Evaluates SNPs associated with increased risk of impaired detoxification capacity especially when exposed to environmental toxins. It also identifies individuals potentially susceptible to adverse drug reactions.
ImmunoGenomic Profile Evaluates SNPs that modulate immune and inflammatory activity. Polymorphisms affect the levels and activity of the cytokines. These variations can affect balance between cell (TH-1) and humoral (TH-2) immunity, reveal potential defects in immune system defense, and stimulate mechanisms leading to chronic, overactive inflammatory responses.
NeuroGenomic Profile Evaluates SNPs that modulate methylation, glutathione conjugation and oxidative protection.
EstroGenomic Profile Evaluates genetic variations (SNPs) that modulate estrogen metabolism, coagulation, cardiovascular disease, and osteoporosis.
(Wow, some of these other tests look good, too.)
On the Genova Diagnostics page - Genova is affiliated with Genovations - they list a ``Detoxification Profile''. Perhaps that is the DetoxiGenomic Profile? If so, here is a link to some information about the Detox Profile:
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Luvs,
I felt that saunas helped me with detox, and I highly recommend them.
If there is any way you can get to a daily or frequent sauna, it helps to increase circulation and the sweat helps to eliminate through the skin. I also made sure to hydrate before saunas and that my diet replenished minerals that I could be sweating out.
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Thanks Vermont.
There is definitely a sauna in my future. But right now my doctor thinks it would pull too much toxin and make me psychotic or land me in the hospital.
Since even an Epsom Salt bath has bad results for me, I believe she is right. It's all about my bad ability to eliminate toxins.
She does think saunas are excellent forms of detox and will be for me once we get things straightened out.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Tracy, they release info on the tests to docs not to the lay public. I have the info somewhere and I want to take the test.
Luvs--what compounded meds can be used to detox? This is what the methylation work was about (lots of threads on that on immunesupport). I had Amy Yasko's genetics and its CLEAR i have a methylation cycle block and yet I haven't taken the supplements yet (forms of folate and bh4) because...I know I can have intense reactions and my life has been so crazy. For two YEARS I've been planning to do this, I keep thinking I'll get another book advance and set aside the $ to work with Amy. It's still my plan.
I'd like to hear what your doc is using to detox you. Please let us know when you find out It could be useful for all of us.
Trust your instincts on your own bodies, folks! Every time I listened to others not me, I often got in trouble. Listened to my own body and own instincts, was safer. Often knew what was going on but not why, later, research would tell me the why.
I can't handle abx either. Or most drugs.
Have a great day all.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Luvs, I'm glad you found this out officially before the abx slowly harmed you, maybe fatally.
I don't know how or why I was able to come to same scenerio on my own. I haven't had the test to confirm or deny that I too am poisoned by abx. I guess it was truly just another blessing in my life the last several years.
I've learned to be a excellent reader of my body and the many harmful things and how these harmful things effect my overall health.
If you are interested on how I've done without abx and made a difference in my health since '03, PM me or I'll even tell so much on this thread.
Somethings are well over some people minds and not exactly in the box thinking. But I learned a long time ago, I really don't care what some others think or say about my story.
It has taken almost 5 yrs to get over some the traditional medicine type things that I did for over 3 years, that actually was harmful to myself and this illness I call lyme & company.
There are plenty of other ways to defeat the enemy. It's a process and some trail and error, and most certainly some bad days. But the hard part is how slllllooooowwwwww it can all be.
Reality and patience is something I had to learn the hard way. I'm here or you can read some of my older posts on detox and treatments that I have used in the last several years.
Good luck. You can get stronger and fight it.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
Peacesoul
Unregistered
posted
quote:Originally posted by luvs2ride:
It is sad that I was too afraid to tell this because I just couldn't bare the thought of being heckled.
tell some really bad jokes, then maybe we'll heckle you ;-)
IP: Logged |
clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
When I first came here, I was so relieved and thought that, finally, I would have a more direct path. And yet, instead, a thousand other questions were raised... No cookie cutter answers here as others have said... what types of medicines/remedies we need, at what dose, for how long, in what order, hereditary influences, soooo many variables!
So glad to hear that you have found your path through this maze...
There truly are some blessings here. For instance, you had the wherewithal to not only pay attention and listen to what your body was saying to you with regard to food, but to follow through. Being so disciplined at such a young age is truly quite remarkable, in my opinion. No doubt that helped you for a good many years.
Another blessing is that you were able to find the appropriate doctors for your particular situation...
I don't think you need to worry about these other threats... continue to place your focus where you always have... moving every day toward a rich and healthy life. It seems to me that your greatest challenge may be to get used to having lunch by yourself .
Thank you for sharing this information.
Claire Posts: 1111 | From Colorado | Registered: Oct 2006
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Luvs,
I just got my own results from this test on Friday. My results were definitely more middle of the road than yours. The doctor is expecting about 4 months of detox necessary before I begin mercury chelation. For personal reasons, I can't start that until August.
But then she thinks I will be able to get rid of the Lyme with lower antibiotics or herbs.
I'll be popping the broccoli pill, because I have problems digesting vegetables. I'm also buying a juicer because I'm hoping I can digest them better in juice form.
Was it nasal glutathione that she prescribed for you from the compounding pharmacy? That's what I'm waiting on.
For those who want a little more information, the test looks at genetic variations that might impact your body's ability to detox.
One part of the test looks at your gene code for enzymes used in detoxification. If there are polymorphism on some of these gene codes, then they point to an increased susceptibility to some cancers and an inability to detox certain types of toxins. They actually provide the doctor with a list of types of medications your body can't detox.
The second part of the test looks at how your genetic code might impact your body's ability to bind toxins to take them out of your system. This part of the test looks particularly at the genetic code related to methylation, acetylation, glutathione conjucation and oxidative protection.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
posted
Thanks for posting this Luvs I know what you mean about hesitating to post info for fear of being jumped on by those who will say it's a bunch of bunk even though they've never tried it or had any experience with it, but this is how medicine progresses.
I remember reading about someone who was labelled a quack because he thought he had found the cure for not just one but a number of "incurable" diseases from a substance derived from molds.
The medical profession denigrated him for a decade so that his invention sat on the shelf. The QUACK was Sir Alexander Fleming, and the substance is penicillin. Wonder how many sick people passed on in that time period who would have benefited from this drug? So why not keep an open mind while still being cautious with new developments?
*************
I found a sample detoxigenomics test with recommendations below - maybe someday they will be able to test easily for which individual drugs are compatible with our genetics so we don't end up taking those that are damaging to us -- of course genetic testing is still in it's infancy but it is fascinating:
DetoxiGenomics - Sample Test - means gene is normal Detoxi COMMENT TREATMENT
CYP1A1 + Detox of burning organic things, car exhaust and cigarette smoke and charbroiled foods. Do Not Smoke, Avoid Charbroiled or well done meats. Avoid second hand smoke. More antioxidants.
CYP1B1 + Detox of burning organic things, car exhaust, cigarette smoke and charbroiled foods. Do Not Smoke, Avoid Charbroiled or well done meats. Avoid second hand smoke. More antioxidants. DHEA, Omega 3 Fish Oil and Red Wine help
CYP2A6 - OK, Detox of Nicotine
CYP2C9 + Metabolizes many drugs. You may need lower doses of certain drugs like coumadin, Viagra, Aspirin
CYP2C19 - OK, Detox of drugs
CYP2D6 - OK, Detox of drugs
CYP2E1 - OK, Detox of alcohol
CYP3A4 - OK, Detox of 50% of Drugs
COMT + - Increased risk of bi polar disorder, late onset alcoholism.
NAT1 R64W - - OK
NAT1 R187Q - - OK
NAT2 I114T + - Some increased risk of environmental toxins, smoke etc Don't smoke, limit exposure to exhaust, second hand smoke. More Cruciferous Vegetables.
NAT2 R197Q + - Some increased risk of environmental toxins, smoke etc Don't smoke, limit exposure to exhaust, second hand smoke. More Cruciferous Vegetables.
NAT2 G286E - - OK
NAT2 R64Q - - OK
NAT2 K286R + - Some increased risk of environmental toxins, smoke etc Don't smoke, limit exposure to exhaust, fried foods and red meat. More Cruciferous Vegetables.
GSTM1 1p13.3 Null Null You are missing this gene. This affects your ability to produce Glutathione, an important antioxidant. You should take extra antioxidants and also extra NAC N-Acetylcysteine and Milk thistle to raise Glutathione levels. Avoid solvents, herbicides, fungicides, insect sprays.
GSTP1 I104V - - OK
GSTP1 A113V - - OK
SOD1 G93A - - OK
SOD1 A4V - - OK
SOD2 A16V - - Increased risk of Oxidative stress may lead to increased Parkisons, ALS. Lots of Antioxidants! Increase Glutathione levels.
Posts: 590 | From Canada | Registered: Oct 2007
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Trish,
I think the test was about $600. But it was over a month ago that I paid for it.
This is not a test that is widely used by LLMDs. I'm not sure it was around when Dr. B was still practicing. It is not a Lyme specific test, it is looking at detoxification. This doctor has just been using for a short period of time.
But I can tell you that some of the specific types of drugs it said I should stay away from are drugs that I have always had a problem taking, such as tylenol and SSRIs. Interestingly, my mother also can't tolerate tylenol and this is a genetic test.
The test also showed I can't detox sulfa based drugs. I'm on Plaquenil which has sulfa and I've had this feeling for over a year that the Plaquenil makes me tired.
One of my results said I have problems detoxing mercury and I just tested positive for a high mercury load a few months ago.
It shows I have problems with detoxing many chemicals and cleaners, and I got really sick a couple years ago when there was construction on the floor I worked on in my office building.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Looking,
Great info you found!
That is the test. It costs me $399.
Geneal, I am so envious of you that your detox pathways work so well. Yet you are still sick? So, detox alone isn't the answer either huh?
Don't worry about MRSA and other infections. I drink garlic daily. Everything and everyone stays away from me!
A few months ago, I found some personal testimonials on the net about eating a raw fruits and vegetables diet that totally cleared up RA for these folks and allowed them to go off all medications.
Yes, I know it is not scientific and not even verifiable, but they weren't selling anything and what did I have to lose? Plus, it fell in place with what I already knew....veggie diet makes a big difference in my pain levels.
So, I pulled out a couple of my raw cookbooks (oxymoron) and began dicing and slicing. First I can tell you, that, so far, it is impossible for me to eat just raw food. I love hot food. So, I can't seem to go 100% but I do try to eat 50% raw daily and it does make a big difference in how I feel.
Yesterday, we spent the entire day obtaining hay for our horses. We had to travel to get the hay plus load and then unload our truck. Add to the day, one of my horses came up with a belly ache and required a vet visit. So this was a long day away from home.
Food was a problem. On the road, it is sooooo hard to find vegetables. I said "Ok, today I eat meat" I had a turkey and ham sub from Subway with lots of veggies on it. As long as I was cheating, I added provolone cheese (I have a milk protein allergy) For dinner, I had chicken and dumplings at Cracker Barrel. My veggies were green beans and turnip greens but you know how they fix 'em, all full of animal fat.
I couldn't even eat the dumplings. First bite gave me heartburn and I seldom ever suffer heartburn. Got home and went straight to bed with a tummy ache. Now, here I am wide awake in the middle of the night with achey joints. I also had a very bad dream. And tomorrow, I drive 3 1/2 hrs to my doctor.
Nothing but raw foods for me tomorrow. sigh.....
As far as catching infections, I was way more at risk when she had me on the Methotrexate. The Humira was too painful to take and after 3 shots I said "No more!" The Enbrel to replace the Humira just never made it to me. I honestly think God was protecting me there.
I also have an allergy to sulfa drugs so the Plaquenil had to go as did Glucosamine Sulfate.
The antibiotics did clear up H. Pylori which made me feel a lot better. And, since I don't detox them well, I guess I'm still protected?
I sure hope the test is accurate. If not, I am going to be in a world of pain. You guys who don't have Rheum. Arthritis have no idea how bad it hurts and to add insult to injury, you visably watch your joints deform. Worse than any horror movie I ever saw.
Those hay bales weigh 45-50 lbs each and my husband and I got 60 of them. It is such a testimony that I could move them at all. You should have seen me scale up the side of our truck to the top of the hay. I looked like Spiderman
So far, I am still functioning. The doctor is very excited with the results she is getting from this new treatment. I will report here how it goes with me.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I have something I printed out a few years ago about a man with lyme, he had/has MCS, and it was caused by Lyme disease,
he went on to day that lyme messes with the Detox pathways, and so that is why you cannot detox, once lyme is better, the detox pathways are better.
Lyme affects us differently, so maybe this is something to think about.
I know with myself, I get very ill from the toxins, VERY ill, but I still need antibiotics,
I cannot go without them, detox supps make me worse, and make me sicker, I also could not tolerate tylenol, but can now since treating lyme.
I dont know much about this test, but whatever works for each of us.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
Some people, like Dr B's protocol and the ILADS think that if abx usage does'nt clear up your illness, then the clinician should look elswhere.
Apparently your llmd has good sense in following their guidelines. Looking elsewhere is a very good idea.
After all, we can't assume rhuematoid arthritis is ALWAYS caused by lyme and it's co-infections.
There may indeed be a genetic susceptability that no abx could rectify.
Especially if there is a genetic predisposition of inability to detox a whole host of things.
Your body must be missing some vitamin or hormone that prevents you from detoxing properly.
I must confess however that your last post leaves me somewhat ammazed!
That any llmd worth their weight in pixie dust, should prescribe the uses of any of those heavy
duty immunosuppressants, to combat your rheumatoid arthritis.
Especially, when suspected of also being infected with a serious infection(lyme/coinfections).
In fact, it's really dissapointing that you are unable to utilize antibiotics in the face of
recent studies being conducted utilizing antibiotics to cure up rheumatoid arthritis
instead of the immunosuppressants you mentioned. With some really good results.
Well, you have a good healthy day now and I hope and pray that they find out what you're
physical problems are, specifically so your doctor can deal with them efficaciously.
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I forgot that was the LLMD who had you on those powerful immunosuppressants. That was imo crazy. So if you got off those thank god as those might have killed you.
Lyme's biotoxins *do* stress pathways and if one has vulnerable pathways that are hit with lyme, then its tough.
A problem then is, once the pathways get really overtaxed, and are unable to detox, and toxins build up, that person may have a very tough time taking abx because their major organs such as liver simply cannot handle the load.
A person with MCS & lyme, or rather lyme that led to MCS, has a very hard time. Even ordinary fillers in the abx and drugs can be a problem.
Sometimes such people can tolerate low dose. Sometimes they have to take low dose steroids too.
I'm not sure the meat is causing you problems? Might be the cheese:). Raw cheese might be okay for you, you never know. I find that store bought cheese tastes "dead" to me compared to raw Amish farmer cheese.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Thanks Luvs for this info. I am going to call my doc today and have this test run on me. My whole family is sick and toxins have always seemed to be a huge problem for me. 20 years ago before I even had an inkling of FM or Lyme disease I used to tell people I feel toxic, like a sewer dump.
I have never been able to take full dose abx, not even close. Everyone of them do something bad to me, but not like allergic. Actually a lot of drugs do weird things to me.
Amantadene gave me severe vertigo, Plaquanil made me itch. Doxycycline caused such a severe herx I end up in the ER, Cipro gave me vertigo. I have gained much ground by using micro doses of Mino. I have gotten my share of heckling for suggesting people NOT use the mega doses of abx. I have never been able to really get above 12 mgs, every other day of Mino long lerm. Even at that 6 weeks and I would have to stop.
Even so, I have gained a huge amount of ground, and I am in a high degree of remission. I have done a lot of things though that fought this stuff but weren't toxic in themselves. My recovery has taken a really long time, but I am a totally different person.
This is so interesting and I feel maybe another piece to my puzzle. I have never tolerated alcohol well, cigarette smoke, smells, jacuzzi;s which may have been killing pathogens all made me fill sick.
Thank you LUvs, I am so glad you decided to come out and share this. If this pans out you will be helping about 10 of us.
One last side note, is that as I get better, I am able to tolerate a few abx, a little alcohol, etc. It seems as my load of toxin making pathogens has disappeared I am able to handle more of the things most confront in regular life without getting sick. In do still become overloaded on occasion and do have to back down on life..........gesh, my mind is swirling with explanations for things. Thanks again Luvs!!!!!
Posts: 1251 | From california | Registered: Apr 2005
| IP: Logged |
posted
I have a question about all this, don't anybody take offense, because I don't know enough about this I am just ASKING
isn't the liver responsible for detoxing your body and metabolizing medications?
I have hepC and sometimes have elevated liver enzymes, and I know many doctors are reluctant to treat me for anything with any meds because they worry what effect it will have on my liver
turns out I have my liver checked every month and I have been fine
i don't know anything about these genetic tests, but maybe they have something to do with the liver?
Posts: 615 | From maryland | Registered: Oct 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
UNDERSTANDING THE LIVER
- chapter from the book, THE ONE EARTH HERBAL SOURCEBOOK (Tillotson)
The liver is a vascular, secretory and metabolic organ that resides in the upper abdomen.
It receives a dual blood supply from the hepatic artery and the portal vein, and is by far our most important metabolic and detoxification organ.
The liver metabolizes (burns) all three macronutrients (fats, carbohydrates and proteins), providing energy, vitamins, minerals and other nutrients. C
omposed of thousands of tiny functional units called lobules, this organ filters over 1,500 ml of blood per minute. If not functioning well, toxins spill into the bloodstream or out into the bile causing inflammation and oxidative stress.
The liver is also a major storage organ. Nutrients are extracted, converted and stored. For example, excess sugars are converted into glycogen and stored for later release.
The same is done for fat-soluble vitamins, other essential nutrients (proteins and fats etc.) and even blood. Moreover, the liver can also store toxins, hopefully for later elimination.
The liver is responsible for the creation and secretion of bile, necessary to emulsify and digest fats and carry away wastes. It also synthesizes various immune and blood proteins necessary for life processes.
Complex chemical substances that enter the liver are neutralized in one of three major ways:
* They are eaten by Kupffer cells.
* They are captured and dissolved into the bile, produced in the gall bladder from components supplied by the liver, and excreted to the intestine
* They are chemically dismantled, tagged and sent off by the enzyme systems for elimination.
Kupffer cells are large specialized macrophages (white blood cells) which phagocytize (eat) bacteria, endotoxins, antigen-antibody complexes and other liver poisons.
This makes the liver an important immune system organ.
These cells chew up most of the larger particles that enter the liver.
However, they produce dangerous oxidative free radicals as a by-product of this process, and the liver requires a sufficient supply of protective antioxidants to neutralize them.
The liver's cytochrome P450 system works on complex chemicals.
As substances such as hormones, drugs, alcohol, carcinogens, pesticides and inflammatory chemicals like histamine enter the system, enzymes oxidize and break down the intruders (a process called phase I detoxification).
After that, the liver chemically tags and changes the breakdown products so that they can be excreted (called phase II detoxification).
This process also results in the release of free radical poisons, so it is important to supply the body with the protective anti-oxidant herbs mentioned above.
The liver synthesizes more than a liter of thick, viscous, heavily pigmented and bitter bile each day to capture, neutralize and carry away poisons, acids, dying red blood cells, drugs, mucus, cholesterol, lecithin, mucin, chemicals, pigments, salts, and minerals.
Once released by the gall bladder into the intestine, the bile helps emulsify and digest fats.
The condition in which the liver is congested or sluggish is known as cholestasis.
This often occurs because the bile has become too thick and loaded down with mucus and inflammatory toxins. Of course, evaluation and regulation of dietary habits--especially fat intake--should be the initial and continuing treatment method for permanent resolution of this condition.
By the way, a lot of mystery concerning how your body reacts to things is eliminated if your realize that sometimes herbs or drugs (and even common foods) help activate individual cytochrome P450 enzymes, which speeds removal of molecules.
They can also inhibit the action of these enzymes, which can be useful for keeping certain chemical substances in the general circulation for a longer period of time. The importance of this varies.
If we have a "bad guy" chemical in our blood, speeding removal is good. However, if we have a necessary or "good guy" chemical in our blood, speeding removal would be bad.
In the same way, if we have a "bad guy," slowing removal would be bad and if we have a "good guy, " slowing removal would be good.
For example, drinking grapefruit juice will keep the expensive pharmaceutical drug Viagra in circulation longer, which means you could probably use half as much and save money. Drinking grapefruit juice when taking cardiac glycosides could raise our blood levels and be dangerous.
*****
Individual variations in our cytochrome P40 enzymes help to demystify why there are so many variations in how we respond to drugs and herbs.
This is why one man's herbal meat is another mans herbal poison.
*****
A well-trained medical practitioner can exploit these facts to your advantage. For more information on this process with common drugs, and a few herbs, look for Dave Flockhart's Drug Tables. (through link above or:
This table is designed as a hypothesis testing, teaching and reference tool for physicians and researchers interested in drug interactions that are the result of competition for, or effects on the human cytochrome P450 system. . . .
Cytochrome P450 From Wikipedia, the free encyclopedia
EXCERPTS:
P450s in humans
Human CYPs are primarily membrane-associated proteins, located either in the inner membrane of mitochondria or in the endoplasmic reticulum of cells. CYPs metabolise thousands of endogenous and exogenous compounds.
Most CYPs can metabolize multiple substrates, and many can catalyze multiple reactions, which accounts for their central importance in metabolizing the extremely large number of endogenous and exogenous molecules.
In the liver, these substrates include drugs and toxic compounds as well as metabolic products such as bilirubin (a breakdown product of hemoglobin).
Cytochrome P450 enzymes are present in many other tissues of the body including the mucosa of the gastrointestinal tract, and play important roles in hormone synthesis and breakdown (including estrogen and testosterone synthesis and metabolism), cholesterol synthesis, and vitamin D metabolism.
Hepatic cytochromes P450 are the most widely studied of the P450 enzymes.
The Human Genome Project has identified more than 63 human genes (57 full genes and 5 pseudogenes) coding for the various cytochrome P450 enzymes.[4]
Drug metabolism
In drug metabolism, cytochrome P450 is probably the most important element of oxidative metabolism (a part of phase I metabolism) in humans (metabolism in this context being the chemical modification or degradation of chemicals including drugs and endogenous compounds).
Drug interaction
Many drugs may increase or decrease the activity of various CYP isozymes in a phenomenon known as enzyme induction and inhibition.
This is a major source of adverse drug interactions, since changes in CYP enzyme activity may affect the metabolism and clearance of various drugs. For example, if one drug inhibits the CYP-mediated metabolism of another drug, the second drug may accumulate within the body to toxic levels, possibly causing an overdose.
Hence, these drug interactions may necessitate dosage adjustments or choosing drugs which do not interact with the CYP system.
Such drug interaction are extra important to take in account when using drugs of vital importance to the patient, drugs with important side effects and drugs with small therapeutic windows, but any drug may be subject to an altered plasma concentration due to altered drug metabolism.
A classical example includes anti-epileptic drugs. Phenytoin, for example, induces CYP1A2, CYP2C9, CYP2C19 and CYP3A4. Substrates for the latter may be drugs with critical dosage, like amiodarone or carbamazepine, whose blood plasma concentration may decrease because of enzyme induction.
- full article and great illustrations at the link above.
=====================================
I'll come along later with some information about Porphyria, when the C P-450 enzymes are missing or deficient - either genetic or acquired - and what to do about it.
Secondary porphyria can occur as well, though may be cleared when infection is properly treated. If any sort of porphyria is present, certain precautions and diet can help.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
At this point, if a person does fine on medicines, etc. and is not bothered by household chemicals or perfumes . . . they may have a perfectly good working C P-450 process.
For others, you may want to read on, check out the links. See what they say for self-care, etc. See if anything helps. Getting a porphryia panel might be a good idea. I think I typed this already, but some insurances would cover it.
However, some of the test cannot be done unless a person is having an attack. My doctor saw abnormal values, but it was not off the chart. Again, he felt it a chronic problem but another doctor might not understand the significance. While chronic, I have severe reactions to chemicals.
And, as well, if I could have gotten the proper treatment for lyme that might have eased as well. Still could.
If you get tested, try to find a doctor who really gets this. Liver specialists would be where to start.
------------------------
Most of what I've posted is just what I've collected as I search for answers of how to treat TBI if porphyria is a player.
No LLMD in my state and no porphyria doctor since my expert retired about 10 years ago. Pretty much on my own with this.
When searching on PubMed, or elsewhere, I am confused when one drug INHIBITS the C P-450 pathway, another SUPPRESSES it while, yet another will ACTIVATE it.
Here's another INDUCER: " . . . Rifampin is a potent inducer of cytochrome P-450 oxidative enzymes as well as the P-glycoprotein transport system. . . ." see http://tinyurl.com/2x7ph8
So, is an "inducer" or a "suppressor" good or bad for what we need to know ?
Figuring out all this is hard do along - while feeling awful. I find the folks at the Canadian site the best to talk to for specific questions.
Testing is tricky at best but may be covered by insurance. Not all labs do the tests, though, and it must be done on urine, blood and stool collection. Urine alone is not enough for a test.
------------------------------------------------
my notes on the subject:
Various colored urine can also be a sign of a one of several types of porphyria. Different porphryias may relate to different hues of the urine.
While color itself can be a diagnostic tool, the absence of color does not rule out a porphyria as some types do not affect the urine color. Over eleven types.
When a particular drug, herb, supplement - or even perfume - uses the Cytochrome P-450 pathway, in a person has any of the eleven (or more) porphyrias or "secondary porphyria" it can cause excess buildup of porphyrins.
This can cause symptoms of varying severity and can, in some cases, be fatal.
Many drugs use the C P-450 detox liver pathyway - and exposures to household chemicals, too, result in stress on that pathway. Gas heat or gas stoves need to be vented and homes swooshed with fresh air often.
Some dietary measures and certain liver protective / nutritional supplement can help. these are very specific, however, so guidance is good.
The last article mentioned below address diet. While it is contrary to some things we do, figuring out how to do it as healthfully as possible can mean the difference in being able to take medicines or not.
Many herxes for us or side-effects of many drugs for many people may be connected with the toxic porphyrin buildup.
Still, infections MUST still be treated. Maybe different meds or whatever works, but infections must not be ignored.
End of my own thoughts now - or what I've gathered over the years. Much more to learn.
Secondary Porphyria: what you should know before starting a CAP
excerpt:
Symptoms of Porphyria- Porphyria may affect the nervous system or the skin.
When porphyria affects the nervous system, it can cause:
chest pain shortness of breath
abdominal pain nausea muscle cramps
weakness hallucinations depression
anxiety paranoia seizures
===========================
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
A "threefold increase in the important liver cytochrome P-450 antioxidant system . . ." that's very good. Best with guidance of a top herbalist or ND. Special care to timing of Rx may be needed.
* Male mice that received diets containing 5% schisandra berries exhibited a threefold increase in the important liver cytochrome P-450 antioxidant system (Hendrich et al., 1983).
Equally important is the enhancing effect of schisandra on the status of liver mitochondria in rats (Ip et al., 1998).
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
After avoiding the RA drugs for 1 yr, I was stunned when this LLMD put me on them. She is a rheumatologist.
I expressed my fear of them and she explained I would need them temporarily while she went after the bugs. When you have RA, your joints are in serious danger and she said the die off could permanently damage the joints.
Every month, we had this same conversation. I really did not want to take those drugs. During the brief 3 mths I took MTX, I was petrified everytime anyone sneezed or coughed. I was so scared of catching something and not being able to fight it off.
Humira says "Don't take this drug if you have a cut" Are they kidding? I ride horses and own dogs. I always have a cut.
I totally agree with you guys about this and I don't feel one bit bashed by your saying so.
I thank God every day I'm off those horrible drugs.
So far (10 days post meds) I am still painfree and feeling great. 10 days isn't much time I know. Only time will tell.
I am really hoping that once my toxin loads are down, I will be able to eat milk proteins without a reaction. I miss cheese the most.
Meat is not the enemy, except red meat. Seems all the doctors know red meat aggravates inflamation. I'm vegetarian for the next 4 to 6 mths just so it will speed this whole process along. I definitely feel best when I eat veggies. This has been so my entire life.
She is predicting that at the end of 4-6 mths, I should be able to go on maintenance treatment which will be for life.
If, at any time in the future, I experience a flare up, we just increase my dose until it clears my system.
Keebler, I am really impressed with the information you have compiled all on your own. It will take me several readings to get through it all.
I will post my progress as time goes on.
Thanks for all your kind words and support.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I'm glad you posted this. My LLMD thinks I have a hard time detoxing, and I think so, too. I can't take very many ABX. Doxycycline is the only one I can tolerate, and although it helped some, I'm still not well.
I also do cumanda and burbur which I can tolerate now.
I started Tamiful this week because my daughter had influenza. I am getting sicker on the Tamiful. I stopped it one day and felt better.
Luvs2ride, I can really relate to what you are saying. I've suspected I have a genetic resistance to most ABX. I could never drink too many alcoholic beverages even when I was younger before Lyme. I react strongly to tylenol, and most over the counter stuff. No wonder I feel worse on ABX.
Thanks for posting this. I'll mention the above test to my LLMD when I see him.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Roro,
My understanding of the first part of the test is that it looks at your genetic code related to the enzymes produced by the liver to detox.
If you have a polymorphism in the gene related to an enzyme, then it means that the enzyme may not work properly so your body may not be able to detox certain things properly.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I want to say, that my old LLMD, had several patients who had to go very slow with antibiotics, low doses and work up,
from what I know, most eventually got better, I am talking 1/4 doses and working up. Some of the LLMD's patients could tolerate high doses right away, and some of these patients had had undiagnosed lyme for 15 years.
What I am saying is this. You have 2 people with lyme, they both were undiagnosed and untreated for 15 years, they then start treatment with the LLMD, and
one patient has to start off with very small doses of the antibiotics for lyme, because the herxes would kill the person, and the other
person can do the full dose right away, and gets better sooner. This has been my experience from the people that work with the LLMD I have seen.
So, these people that take longer to get well because they have to go slower with the antibiotics, they are the ones with the detox problems, possibly from Genetics?
possibly from lyme? or babesia?
I am not sure. I know with myself I had NO problem detoxing, until I got lyme, I had NO problems with foods or chemicals, I did not have MCS, I did and ate anything I wanted to,
but as the time progressed, I became MCS and sick. I think this is when I got lyme, but the LLMD I use to see said my symptoms were not typical lyme, and now the 2nd LLMD I am seeing says Babesia is a huge thing, tested positive
on 2 different tests. I still need to treat lyme though too.
I dont know if I did not have lyme, if eventually I would have MCS? because maybe I have a Genetic detox problem?
I would like to find someone with MCS, that does not have lyme, and if they have a genetic problem to detox.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Hmm. - those with MCS who got it solely from chemical exposure such as spraying for insects, etc.
True, some folks seem to be able to tolerate anything.
However, some very healthy people whom I know clearly had the only trigger as a concentrated exposure to chemicals whether farm, industrial or pharmaceutical.
From there, with the liver damaged and not working well, other symptoms developed.
That would be a different population than those with infection based or genetic based MCS.
And, with some from any category, the genetic thing could be just hiding until challenged.
For others - it could be total load. . . too many toxins and then the fall.
Thanks for posting. I'm allergic to almost any antibiotic they have. When I did try the antibiotics, I was nonfuntioning, mentally and physically. I was so depressed, it was scary.
I tried the doxy - the quality of life was more than lacking. Now that I went back to herbs I have a brain, I can actually participate in life on herbs and supplements.
Many can scoff, but I hope you have the same success I have had with the alternatives. I'm not healed yet by any means. I'm just funtioning at a higher level while I kill the buggers.
We all have to find our way to heal. If antibiotics work for some, that is wonderful and I am happy for them.
Hope you feel better quickly!
Gail
-------------------- Gail Posts: 234 | From Sterling, Ma | Registered: Jan 2008
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Wallace,
You speak words of wisdom when you advise us to listen to our bodies.
Before the arthritis struck suddenly, about 8 mths before, I was staying with my mother temporarily. I had accepted a job in my hometown but was living in another state. I was commuting and staying with my mother during the week.
I have always loved veggies and had pretty much been deprived of them for 15 yrs (not totally, but if I had brocolli once a week, I had to fight to get it....read above). So, my request to my mother was "please fix me fresh vegetables for dinner with nothing on them. No butter, no seasoning. I don't normally eat them so plain, but at that time, they tasted like heaven to me.
Finally, my husband was able to join me in VA and we bought a home and life went back to as it was before staying with my mother. Diet tanked. 4 mths later, the odessey began.
We all look back on that time when I was craving plain vegetables and realize my body knew what it needed. Too bad I didn't stick with it long enough to detox, heal and prevent this stupid disease.
Get to know your body. After you eat, pay attention to how you feel. If you feel bad, what you ate is probably not good for you.
Apply this same logic to everything, not just food. If something makes you feel bad, don't do it.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Health - My mother has worse reactions to drugs than I do and she does not have Lyme. She finally threw out all the tylenol in her house because she realized it was making her sick and she can't handle any pain medication administered at a dentist's office and can't tolerate most antibiotics.
I don't really have MCS. I've had reactions to chemicals, but it has been with pretty major exposures, like construction on my office floor for a number of months.
I definitely think this did get worse with Lyme, but remember that I was on drugs that my body can't detox for a number of years by the time I had that exposure. I have mercury build up because my body can't detox mercury. So part is the Lyme is stressing my body and part is that I've taken meds because of the Lyme that my body can't detox.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Ok folks, here is the prescription meds I will be taking and the website of the pharmacy that is compounding the meds.
I have had a chronic cough for years. At one time, the cough would last throughout the day and I was diagnosed with mild asthma.
But years ago an herbal combo from Nature's Sunshine called ALJ cleared my bronchial tubes which relieved me of my asthma symptoms and reduced the cough to just 15 mins every morning. During that 15 mins though, I must cough up about 1/4 cup phlemn every morning and have said many times throughout the past 2 yrs that "I will really know I am well whenever this cough goes away."
Well folks, perhaps this Reduced Glutathione will be the ticket. I'll let you know.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Just because the genetic test says something it does not necessarily mean that it's accurate or that it can't be fixed.
There is also a new study about epigenomics (or is it epigenetics?). There are factors that can influence or change genetic markers.
Many of these this that can change the DNA are simple things like eating pure foods, drinking pure water, or on the negative side inhaling molds, pesticides, or second hand smoke.
Much of the sections of the test (from what was written prior) consists of things that seem like common sense - like avoiding toxic molds, auto exhaust, cigarette smoke, pesticides, tylenol.
Probably, most every human can't handle these chemicals that are like a toxic soup in the environment.
The immune system is very delicate & requires balance. We do not thrive in a toxic environment.
Some people may be resistant but sooner or later the combination of toxic chemicals in the environment will take it's toll on even healthy people.
I'm in a situation now where the test would be prohibitively expensive.
I think if we are open we can tell which things are harmful to us without an expensive test.
It's best not to force yourself to continue with any drug, food, or supplement if it doesn't make you feel better after an initial trial period.
I don't think the test is necessary but if you can afford it - it's not a bad thing.
Just keep in mind that it may be inaccurate & not to get stressed if it says you have certain tendencies.
Genetics are a new science & not everything is written in stone.
In my experience, I felt bad when I took abx. I just don't think they are meant to be used on a long term basis.
We are all different & need different solutions to our issues.
Good luck with your treatments, everyone!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Did your LLMD actually say AB's were POisen for you??? my understanding was that these tests just showed an inability to remove the toxins from the die-off and the antibiotic toxin itself.
I had the HLA Test and the test that you are refering to by holisticheal - I showed the genetic defect on the HLA and an inability to eliminated AB's etc on the other Genetic test.
My LLMD said he has many patients with the same readings and he just ensures he does detox with Actos/Chlorestamine and detox herbs and vits for at least 2 months and then restarts antibiotic or co-infection meds (both pharmacuticals and herbs) - he keeps you on detox protocol whilst on antibiotics as this will overide/take over from what your body cannot do (detox theses substances. But ensures he calms down the cytokine response/storm with actos whilst doing this.
So effectivly removing any toxic effects that have occured whilst taking AB's and then going a little slower and keeping detox high - He said these patients with this genetic defect get better it just takes them longer.
I have been on the detox protocol for only 1 month Actos/Chlorestamine and herbs/vits and already I am 30/40% better, I will then restart Ab's for co-infections and Lyme in another month.
posted
Good points are being made. I agree with a lot of them. Bruce lipton talks a lot about this in Biology of Belief.
To rianna, Shoemaker says 25% of people are liable to get mold. Sure take detox but what if you are living in a home with mold? Where did you get this mold from? Docs just adding CSM to their mix of supplements without tracing the source of the mold seem to me missing the fundamental point of Shoemaker that you need to get away from the source of the mold. You wont get well unless you do. If you dont have mold why prescribe CSM?
Shoemaker has his tests VCS and tests for low msh etc so they are other ways of doing this. The VCS test just costs a few dollars. If you cant afford the tests listen very carefully to your body.
What I am saying is that if you have a problem with abx its not just a genetic problem but because you have other neurotoxin problems including mold probably. wallace
Pleased to hear Luvs is feeling better!!
Posts: 654 | Registered: Oct 2003
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
I am not taking the CSM/Actos for mold but for eliminating the Neurotoxins created by the Lyme and the die off from Lyme - If you have a genetic defect HLA test or similar then you need a protocol that will pull these harmful toxins from the body,
So CSM/Actos and supportive vitamins/Herbs enable these toxins to be eliminated from the body - This protocol is not just used for Mold it is also used by many LLMD's etc to eliminated these harmful Bio/Neurotoxins.
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Sparkle said: ``There is also a new study about epigenomics (or is it epigenetics?). There are factors that can influence or change genetic markers.''
Absolutely right! There is compelling evidence that many hereditary or genetic traits can be altered by environmental factors and passed on to the next generation. This goes against what was originally thought about genetics! Even rigid thinking or high levels of emotions like anger can actually alter our DNA and make it less able to adapt - less flexible - to new conditions or changes in the body.
There are other ways to alter inherited tendencies - like miasmatic treatment (homeopathics and other related therapies) - so we are not always `stuck' with the lousy cards we got dealt from our ancestors.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
posted
Rianna We will agree to disagree. For me docs just adding csm are not reading Shoemaker carefully enough. He after all invented this use of CSM so we need to pay attention to everything he is saying. Chronic lyme means a problem with biotoxins which include mold and the problem should be traced for as much recovery as possible.
Anyway something to consider if your recovery is limited. Have you read Shoemakers books?
I hope your new treatment gives you good results, quickly. Best wishes.
-------------------- Take Care, DakotasMom01 Posts: 371 | From NJ | Registered: Dec 2007
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I get intravenous glutathione every week or two and have for a few years. Its very helpful. I would suggest if you're going to get that, that you begin with a low-dose Meyer's cocktail, according to the formula used by Dr. Katz at Yale (that is done in an IV push, but you can make it into a drip if you get a small bag). My doc has the kind of IV line where down near the catheter, there is a "Y" shape, so you can stick a second IV in later without "mixing" the two liquids. He gets small 100 ml isotonic saline bags and puts the glutathione in this. Many patients get this glutathione "chaser" after their vitamin/mineral drip. Glutathione is too delicate to mix it with anything. I get 1000 mg.
It is the major antioxidant your liver uses and it also boosts the immune system. Lyme is known to oxidize glutathione and babesia oxidizes red blood cell glutathione.
I love my glutathione.
However, according to Amy Yasko I supposedly have trouble detoxing sulfates (? I'm trying to remember) and glutathione might backfire on me but so far it hasn't. However if you had trouble with epsom salts pay attention to your reaction to the glutathione (its sulfur based).
I don't like the b12.
Magnesium and b6 and other nutrients in the Meyer's cocktail are important. High dose is not necessary.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
That might be why my liver was so ticked off when I did abx all those years. It was trying to tell me, don't take this poison, you're killing me.
My liver and spleen used to scream. Felt like they were a punching bag. Overloaded with toxins and add some abx that my organs couldn't deal with or refused to deal with and I had....
the illness from hell. Every part of body would feel like someone has beat me with a baseball bat.
Took about 3 yrs to get the toxins in my body down to a level that my organs now only scream during a herx cycle, maybe? Except for my colon that seems to have been taken over by some unknown other bacteria????
Most likely this unknown bacteria that is controling my GI tract happened much later in my illness after another round of embedded ticks. None of these GI symptoms came about in the original illness from hell.
New embedded ticks, more crap to deal with. I'm going after bartonella now. I don't believe I will try the abx again. I think I might be able to get bart with something else in mind.
Something alternative that doesn't tick off the rest of my body, or causing a whole another issue of symptoms. I'm not going there!!!!!!! That's my thinking today. You never say never though.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Rianna,
My doctor pulled all my meds except Doxy 100mg MWF. That is a very low dose mycoplasma protocol.
She pulled plaquenil, amoxycillan, zithromax, Nizoral, Methotrexate and Enbrel (Enbrel I never started. I held off out of fear)
Her exact words were "You cannot detox drugs. I have been poisoning you".
Literally, I believe with artificial help and by not continuing to add to my load, I can detox. Just sloooowwwlllyyy.
Oxybabe, I have been on IVs of glutathione for 1 yr with my first doctor and loved them. I have only had a couple with the LLMD but she is currently giving me 4 weekly IVs and I just started the inhaler today. I think I feel a headache coming on, darn it.
Everyone else, please let me clarify I have been a success story for a long time. I was doing very well in April when the duck rheumy proclaimed me nearly dormant. Another tick (dog tick) made me dog sick and sent me to the LLMD for abx. I felt a recent infection would do best with abx care.
She found H.Pylori and treated it for 7 mths. After just 30 days, my health did a giant leap and I have not been in any pain since (except my damaged left wrist which is also improving).
So I was shocked when she found the "rheumatoid explosion" which I believe she means "in every joint". That really stunned her and me. Me because I wasn't yet feeling it and her because she had me on so many anti-inflammatories.
Hence the detox gene ability test. This test read me like a book. It explained my entire life history.
I have read before too that bacteria can damage DNA, especially mitochondria which causes cells to die when they become invaded. The bacteria turn off the mitochondria so the cell can't die and the bacteria or cancer thrives. My mitochondria is damaged.
I like the sound that the DNA can be repaired. I will be focusing on that. I am the eternal optomist.
Thanks everyone for your support! It is truly appreciated.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Sparke7 -
very well said - all of it but, especially, " There are factors that can influence or change genetic markers. "
I sure like to think my body can overcome stuff . . . new cells, you know. If I do my job, they'll do theirs, sort of thing.
i suspect that some of these new genetic tests will eventually be used by insurance companies to deny people coverage. I'm a bit concerned that they may not be accurate or that people do not understand that genetics are modifiable.
It's nice to be able to take a test to see what may be happening but some of this stuff is just common sense... neurotoxins, harsh chemicals, pollutants, pesticides, modified foods can all pose difficulties for the body to detoxify. Just because your body doesn't have a big issue re: genetic test with smoke doesn't mean it's OK to go out & start smoking or get a job working at a toll plaza.
There's still alot they don't know about this area. We are all living in a toxic soup of chemical interactions. They really don't know how this is going to affect us. It just makes sense to me to limit exposure to toxic chemicals when possible & to try not to be extreme with supplements, drugs, or any treatment. There's still alot that isn't known about the human body.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Luv,
Has she put you on a protocol to eliminate the Toxins, Toxic effects of the drugs etc???
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Is Plaquenil considered a "heavy duty" immune suppressant? I take that for several reasons...
Babesia, cyst bust, anti inflammatory..... I cannot take flagyl or tini
I did the vision test to see if my body is having difficulty detoxing and it showed that I am..
My lyme doc prescribed a powder medication that I think is actually a cholesteral medication, but it also binds with toxins to remove them from your body.
My first dose of this stuff gave me incredible relief.
O.K. Hope you are feeling better and I find your information very interesting. I am going to book mark it to come back to later and study up on.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Sparkle,
Free medical care? Guess not. Actually, I feel she treated very appropriately. She started traditionally and when I began to backslide with the mild joint swelling, she immediately took other steps to figure out why.
Lymewreck, I cannot find where Plaquenil is considered an immune suppressant. It is an anti-malarial drug that works well for RA and Lupus and the exact reason why is not known (never will be as long as they deny infectious causes to RA)
I really like the plaquenil and wish she had kept me on that one. If I backslide, I will ask her about it. It has relatively few side effects. The possible vision issue usually takes years to happen. I have babesia too and thought she was giving it to me for that reason.
She is doing herbal IVs now for the Babs. MTE9 it is called. I understand little about it. I am halfway through the 4 week treatment. I don't see the doctor until April, so it will be awhile before I know if the Babs is gone.
I do not have any Babs symptoms but still test positive for it.
If your powdered chelator gave you noticeable relief, it sounds like a good thing for you. What is it called?
Rianna,
She has started me on a detox protocol.
1-Pectasol Chelation Complex - It is a pectin alginate complex (I'm reading the bottle) I started this two weeks ago at 1 capsule daily and am to work up to 3 caps daily. I increased dose to 2 just a couple of days ago.
2-Reduced Glutathione - Nasal Spray. I just started this yesterday and by evening my ankle was swollen. This morning, I am achey in many places. The pharmacist that compounded this said it does help with detoxing as well as prevents an immune reaction whenever I inhale toxins like the dust and mold in my barn.
3-Cruciferous Vegetables: brocolli, brussel sprouts, cauliflower, cabbage, onions, garlic, etc. These veggies promote detoxification, are anti-inflammatory, full of nutrition and are anti-cancerous.
Please don't overlook these, they had an incredible positive impact early in my illness when all my joints were frighteningly inflamed.
Sparkle,
Yes, the genetics test can be used against you by insurance companies in most states. Only a few states protect you from cancellation.
IMHO, the insurance companies should embrace and demand these tests on all people prior to illness and certainly prior to treatment.
Just think how knowing your weak areas could help you to stay well. Being genetically prone to something does not equate to getting it. As I pointed out earlier, I never got alcoholism even though I am genetically capable.
Instead of cancelling us, the insurance company would save tons of money and could aid in keeping people well most of the time.
How nice it would have been in my childhood and all throughout my adulthood to know that antibiotics were not a good treatment choice for me.
According to my doctor, my current toxic state began at birth. Due to my poor detox pathways, crud just began to accumulate until something like the tickbite broke the camel's back.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Luvs, I have experienced exactly what you and your doctor are saying. It also happened to me. But I am of the opinion that you can detox the body of these toxic chemicals. But what/how to do it, is the unknown sometimes???????
They can be lessened or removed over time. Lots of work to do it. No, there's not a magic pill to remove the residue of toxics deposited in the body by some meds. That was sarcasm, folks.
You and your doc are not crazy Luvs!!!! Aren't you happy to know that? lol
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Luvs, I get a bit of a strange impression of your doc, who first puts you on heavy duty immunosuppressants (not typical for LLMD) and then now switches you off everything, and gives you herbal IV's--that sounds like playing with something risky to me, an herbal IV. Herbs can cause problems too and not be easily detoxed.
If your ankles swelled with nasal glutathione you could have problems processing the sulfur.
Good luck. Please think twice and don't blindly trust the doctor.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Nope, my ankle is fine today and so am I.
Don't worry. I never blindly follow anyone anywhere. If I did, I would never have sought out integrative medicine. I would have just stuck it out with a standard doctor.
I'll keep you posted on my progress.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
PS:
I think what you guys may not realize is that with rheumatoid arthritis, permanent joint deformation is occuring and must be stopped.
In my case, she describes it as "explosive". 2 yrs ago, I would have agreed, but currently I hardly ever feel even an ache. So, I can only assume by explosive, she means in every joint. I am fairly certain that is what she said, but I was in such a state of shock to hear it.
As she explained to me when I begged her not to put me on MTX and Enbrel, when she goes after the bugs, the die off will damage my joints. The MTX and Enbrel will stop the damage.
It was a multifaceted approach. Abx to kill and MTX, Enbrel to prevent the immune response from destroying my joints. Not destroying my joints is a good thing. If you haven't experienced it, you can't possibly understand the horror.
Please understand that auto-immune is very very serious.
That was her gameplan until my body said "uh-uh".
The gene test says right on the results that it is not 100% accurate. But I'm not stupid. I have lived with my body for 52 yrs and I know it very well. The test results were right on target.
I can only hope her new direction proves successful for me.
I am very happy to come off all the meds. Search my earliest posts. You will see me state that I have had so many abx in my lifetime I could be an antibiotic poster child and if abx were the answer, lyme could never have thrived in me to begin with.
Coming off the meds just fits what I have known about myself all along. Please remember that Dr A was treating me completely without drugs and I was improving.
So far, I have no complaints. Yes, I do believe her work is experimental. So is everyone of yours. Any lyme treatment is experimental. How I wish we had the "just right" answer.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
re: cave76 - I don't know if these tests are accurate enough or not----but I'm certainly sure that that 'messing' with genetics and the immune system is a very delicate thing.
Everyday our genes & genetic markers are effected by everything in the environment. Check out the show they had on Nova about epigenetics & you'll understand more about it. It transcends the genes we are born with. I guess stuff like hair color or eye color are hard to change genetically - now. Maybe in the future it will be different.
The insurance companies just care about the bottom line. I don't think they care about our health. It seems they are in collusion with the hospitals, drug companies, gov't, etc. to make all the money they can. They don't give a damn about the welfare of the American people. If this wasn't the case, we would all be entitled to healthcare as American citizens - not as American workers. If anyone decides to get genetic testing - you really should make sure your privacy is protected & that no one can access your reports except you.
-----
Good luck luvs!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
oxygenbabe,
luvs and I have the same doctor. This doctor has been reaching out to more alternative therapies to help her patients who do not respond like others to what we know as traditional treatment by an LLMD.
She has a biochemistry background and won't do anything she does not understand the science behind. She also believes strongly in treating patients' symptoms while treating their Lyme.
I think that's why she had luvs on the immunosuppresants, to take care of her joints while treating the Lyme. Pain control has always been an important part of my treatment.
I also found out that the integrative medical center where I get my Myers Cocktails also uses this test.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Good post. Any more responses?
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
posted
This test does look really interesting -- I'm looking at the website right now.
I have very severe MCS. I can't be around anyone who doesn't go through an elaborate decontamination process. Before coming into my space, people have to use nontoxic fragrance free body care and hair products for at least 2-3 weeks, wash their clothes in fragrance free detergent, and THEN change clothes at my house into clothes I have washed here in fragrance free detergent.
I have severe neurological, cardiac, and full-body reactions to minute amounts of fragrance and other chemicals.
I have had really adverse reactions to both medications and natural treatments such as homeopathy.
Even with that, though, I tolerate antibiotics like a charm. It makes no sense at all!
I *know* I have detox problems though, and I use glutathione, EDTA suppositories, red root, detox baths, and lots of other things to detox. I definitely agree with the power of cruciferous veggies and found that cabbage juice in particular helped bring my liver enzymes down when they were elevated.
I really want to get this test too now. I'm so glad you are armed with this great information now and can hopefully find a treatment that works!
Posts: 929 | From Massachusetts | Registered: Oct 2007
| IP: Logged |
posted
Hubby had 2 out of the 4 possible tests done 5 or 6 years ago I think when the lab was called Great Smokies -- before they were bought out by Genova Diagnositics.
The lab has added a couple of new genetic tests -- actually some of the same genes are tested with the Detoxigenomics test and the Neurogenomics tests.
And of course the cost is at least twice what it was 5 or 6 years ago. According to the Great Smokies info we received when the original tests were designed -- the tests only test for things that can be improved with supplements or diet.
Don't just assume that because you have bad reactions to antibiotics that they are toxic. Many of you have read of all the difficulties that hubby has had with various antibiotics.
According to the genetic tests hubby had done he only had a slight problem with the methylation pathway -- SAMe has helped greatly with this.
His immunogenomics test did not show any major problems either. He did not do the cardiogenomics test and I can't remember what the 4th test was that he did not do.
When hubby did the detoxification profile offered by the same lab -- results were VASTLY DIFFERENT. The detox profile test is much cheaper -- think it used to cost around $135. This is a functional test -- does not test genetics, but how your body is actually working.
The test measures 3 major detox pathways -- including glutathione. Also measures lipid peroxides -- CoQ10 is the best supplement for lowering free radical damage.
Hubby has done IV glutathione pushes at home for the last 5 1/2 years since he has had his PICC line in. Sometimes it has been a lifesaver and other times it has not seemed to be of much benefit.
He has also done the inhaled glutathione with a nebulizer. Supposedly some of the oral glutathione supplements are now better absorbed but hubby has never tried those since his insurance pays on the IV glutathione and he has the PICC line.
If you can afford it, I would suggest starting with the Detox profile since it actually measures what is working or not working in your body and then if there are major problems you might want to consider the genetic testing.
In my opinion, a funtional test is probably more important right now than a theoretical genetic test.
Bea Seibert
Editing to add : The detox profile test may be covered by insurance -- BCBS paid on hubby's test. The genetic tests will not be covered by insurance.
[ 10. May 2008, 08:25 PM: Message edited by: seibertneurolyme ]
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
![[woohoo]](graemlins/woohoo.gif)
![[Frown]](frown.gif)
![[kiss]](graemlins/kissing.gif)
![[Wink]](wink.gif)
. ![[shake]](graemlins/shake.gif)
![[Big Grin]](biggrin.gif)
![[lol]](graemlins/lol.gif)
Printer-friendly view of this topic